diabulimia is not officially coined a term in the medical world, but it is used to describe when diabetics, usually type ones omit their insulin (meaning skipping some injections/ taking less insulin for weight loss). Sadly I have done this, and still do from time to time. My A1c is currently 13%. I check my blood sugar maybe once a day at the most, and can go a whole day without taking ANY insulin. I do this ALL because I want to stay skinny. It’s slowly ruining my life. I have no energy, sometimes I cant concentrate in school, and I always feel sick. It is time for me to get my diabetes under control and get my life back! any suggestions, or if anyone wants to chat with me I would LOVE LOVE to because I don’t know any type one diabetics and it would be nice to talk to someone going through the same thing, or even not going through the same thing- just so I can pick your brain.
Kirsten, we have a member here named Lee Ann, who has gone through, and come out of this serious condition. She also is an active blogger, and the name of her blog is The Butter Compartment. Take a look at what she has written, and you will find someone who knows exactly what you are going through. We welcome you here at TuDiabetes, I see you just joined. We are all here to help each other with ideas, support, and compassion. Please feel free to ask me if there is anything you have a question about. We are a no blame/ no shame kind of community.
Kristen, I have gone through this and i know what you mean it totally wipes you out. I know its hard to quit, but so important. I am young(25) and have complications now because of diabulima when I was a teen. If you ever need to talk feel free to contact me.
Give me a shout any time… I have definately heard of cases where people miss insulin injections in order to lose weight. This is definately not safe for anyone to do. There are definately other safer ways to control weight without putting yourself at risk and most likely make it easier for you to keep good numbers. I know that when i started exercising it wasn’t easy to stay motivated but i started to feel better and my blood sugars were easy to control. Now it’s just part of my routine. Like i said I’m always around to chat or whatever, give me a shout. I’m also on Facebook and/or msn
I am glad you see the light. a neighbor of mine had 4 kids with T1 diabetes. one of them was dx’d at age 15 and she didn’t handle the diagnosis well or so that’s what I understand. after a few years she started to lose weight not just here and there, but it was as if she was wasting away. a couple years after that she passed away due to complications from the eating disorder and the diabetes. I wish she knew what you know now and what I have known practically my whole life. I’d rather live than become a slave to my disease.
Kristen, I’m so glad you are here and thank you for sharing your story. There are MANY who struggle with what you are dealing with. I hope that they will feel inspired by you!
For me, the thing that helps me most in dealing with diabetes is the reminder that I am not alone. I check in on TuDiabetes every evening and have developed so many wonderful friends here that make everyday life with diabetes easier to deal with. So I encourage you to keep up the conversations with other people who live with diabetes. It can make all the difference.
When trying to “re-start” my life with diabetes, I always commit to one thing per week. For example: This week I will remember to check every day after lunch.
You can do this 
We can help! Keep us posted on how you are doing!!!
Thanks for your courage to let us know about this, i didn’t knew this had a name, now I know, it’s so easy to think that missing your insulin shots or in my case that i’m type 2, stop taking oral medicine and adding some sugar everyday you can have a healthy weight… but we must ponder in the future consequences and think that with this we can deteriorate our condition…i’ll will try to be more conscious about this and if you need help or somebody to talk to, feel free to contact me, ok?
i’m not sure if anyone else has expierenced this but when my a1c’s are a little high i actually gain weight. my doctor always knows when it’s going to be a few points higher just by looking at my weight. i’ve personally noticed that the better my numbers are, the easier it is for me to keep off weight. my guess is the better my numbers, the more energy i have, the harder my metabolism works burning off fat instead of using my own fat as fuel and putting it back into my body. if you take control, eat healthy and exercise you will realize how amazing you feel, the more amazing you feel the more self confidence you will have, the more self confidence you have you won’t care about 5 or 10 extra pounds, plus you will be happy which i think helps keep weight off also.
Hi Kristen, I am so sad to say that I also do exactly what you do and I wish every day that I can sort this out as I have 3 kids that need me to stay fit and alive. I saw my educator the other day as I got a stomach bug which in normal terms would never have affected me but because I was so hi with Ketones, no energey, no insulin to keep me going etc etc I ended up in hospital with suspected diabetic ketosis which basically means near coma stage. I scared myself, the kids thought mum was going to die and my husband was beside himself with fear {mostly coz he thought he would be left looking after the kids full time lol} . I fully understand what you are going through and do not condone any of our actions but easier said than done eh. I am now on the learning curve again to get all my levels just right and eat good etc and it is bloody hard but i am going to do this for myself and family. My night cramps have all but gone, heart burn clearing, sweats and low energy slowly returning, my vision has got so messed up doing this that I fear my next eye test, i can barely see at the moment as I have neglected it for ages wearing those cheap reading glasses from the pharmacy to get me by. Don’t know what damage I may have done but I want it all sorted I am sick of living in an image I think is normal when infact all shapes and sizes are and should be normal eh. Your very young and have your whole life ahead of you hun. I am 37yrs old and was diagnosed last nov as type 1 which is pretty old eh to be getting this. I am here if you want to yap ok
take care sandra
I have struggled with diabulimia for years. I still fight the urge, especially since gaining a lot of weight, but I’m committed to keeping my diabetes under control. I want to have a baby, and I can’t even think about that until my A1c is closer to 6%.
Like you, my A1c’s used to run around 13%. I felt terrible all the time, but I fit into my skinny clothes, which (for some stupid reason) was far more important to me. It wasn’t until I began to lose kidney function that I really woke up.
Just know that actually admitting it out loud (or in print) is the best way to begin to heal. I know it sounds trite, but until I took the big leap of talking about it, it was my “little secret.” If no one knew, it wasn’t really real. Now, my Endo knows, as does my husband and family. I have their support, just as you (now) have mine.
I struggled with it for about six years. I used to think I was so lucky to have diabetes because I could lose weight so much easier than other girls. It was so great that I didn’t have to starve myself or throw up to drop pounds.
I think the major turning point was when I starting using a pump. It was much more difficult to restrict insulin while using a pump. Before, I’d skip my nightly Lantus injection, and take Humalog only when I began to feel really bad. I almost never tested my BS because I knew the numbers would be terrible. I was scared all the time - scared to stop and scared to continue.
When I finally took control, it was a few months before my wedding. I wanted to get healthy so that I could (eventually) have a child. I confessed to my endo and to my fiance. My endo (at that time) was terrible. She didn’t understand what my life was like, and she ended up scolding me for my 13.8% A1c. I dropped her like a hot potato and found a more understanding doctor. When I finally took charge of my health, my A1c went from 13.8% to 8.5% in three months. It has decreased each time it’s been checked, to its present 6.8%.
Yes, I gained weight when I stopped withholding insulin. I couldn’t eat the way I’d been eating for six years. It took several months for my body to begin adjusting to insulin again. At first, I bloated like crazy - my hands and feet were so swollen, I thought I was having some kind of allergic reaction. I wasn’t; I learned that this is normal during the abrupt restoration of glucose control in a patient whose control was previously poor. It went away after a few days (and I was sooo tempted to take my pump off to make it go away sooner).
You will find that once you’re in better control, you won’t be as hungry all the time. When you’re withholding insulin, you are basically starving yourself. In that situation, you’re going to be hungry. When your body adjusts to having adequate insulin again, you’ll be less hungry. You will have to exercise more, though. It’s not fun, but it’s necessary.
My parting thought is this: I understand that you want to be healthy, thin, and happy. Just remember that being thin (by whomever’s standards) is not more important than being healthy. Good health lost is sometimes irrevocable. Being thin is not worth the complications that can come from uncontrolled diabetes.
I’m an open book about this, so please feel free to ask any additional questions.
Hi,
This is not something I generally talk about, but all of you have been so supportive of each other. I come at this problem from kind of the opposite direction. I’m 29 and have had anorexia since I was 14. 3 years ago I was diagnosed with type 1 and life turned upside down. My alc was around 19 when i was diagnosed, and as soon as i started taking insulin i gained about 25 pounds in less than a month, which needless to say, scared the crap out of me. (and it was right before my wedding, so i was already worried about how i would look in that big old white dress.) when i started looking online for resources regarding people with eating disorders and type 1, and everything i found was about people developing eating disorders AFTER being diagnosed. it seemed crazy to me that after years and years of everyone telling me to eat the cookie, i managed to get the one illness where you have to really think about eating the cookie. i was at a sort of stable, not amazing but not terrible point before i was diagnosed, and the sudden focus on every single thing i was eating caused me to really relapse. on top of that, i have a ridiculous fear of needles–not really being stabbed with them, but about having to do it myself–so it was very hard for me to give myself the injections, and thus pretty easy to skip them, even though it wasn’t really to intentionally lose weight by skipping them. And for at least 6 or 7 months i didn’t really lose any weight, until all of a sudden. and then i was like you, where i could actually eat more to lose more weight, which was a pretty big change for me from starving to lose weight. I spent almost a year doing that, and it was pretty much a huge disaster. I could fit into all my 8th grade clothes, but was so sick all the time and had no energy. (which was ok, in my crazy head, bc i was so thin!)
i finally decided that the injections were too much for me to do everyday, and went on the pump this summer. when i started, i weighed a bit more than i would like, but was ok with it. and even thugh everything i had read talked about how when you start pumping, you might gain some weight (either bc a lot of people start eating things they previously hadn’t, bc it’s so easy to bolus; or, like in my case, your body has crazy fluid shifts when you suddenly start actually taking the insulin again) So, I gained about 25 pounds again, in a few weeks, and spent the summer depressed and mad at myself. but when i saw my endo in July, my a1c was down to 7.9, which sounds terrible to other people, but was a miracle for me. I was upset about how much i weighed, but also knew that if i started screwing around with the basal and bolus rates, my a1c would go right back up and my endo would know. i started making a really conscious effort then to do what i was supposed to, and actually cut down a lot on my crazy exercise, started eating a more normal dinner, and miracle of all miracles, I’m now actually 3 pounds less than when i started pumping–which is still a healthy weight for my height–and at my appt. last week, my a1c was 6.1.
I’m scared that there is probably no time any soon that i’ll be fitting into my tiny jeans, but i want to have kids at some point in the near future, and don’t want to jeopardize that anymore than i already might have.
anyway, i know none of my story is terribly helpful to you, but i just wanted you to know that you’re not crazy, and definitely not the only person out there feeling this way. I think it’s hard sometimes too for people who haven’t had this happen to not look at you like you’re crazy, because it is probably pretty hard to understand why you feel so strongly about something so inconsequential as your weight or what you look like.
please let me know if you want to talk or just need to vent.
take care of yourself!
alli
Omg… Kristen… I do this too! It’s awful… and I wish I could stop but like you… the obsession (at least for me) of being thin is just too great. I got super skinny right before I was diagnosed with T1 and was anorexic so I was used to not eating anything and having that be the way to lose weight. And it sucked… big time. But I felt like crap… ALL the time. Then I was diagnosed with T1 and I started eating again… not like a lot but more than my usual nothing. And I started associating my blood sugar readings/numbers to weight. So I was extremely big on LOW numbers. My a1c went from 10.9 to 5.1 like INSTANTANEOUSLY! It was a miracle. But I gained like 20+ lbs 
It was awful. Here I was: eating (pretty healthy) and taking my insulin (like I should’ve been) and checking my sugar like 10+ times a day… keeping my sugar NEVER above 120. I felt amazing with my progress with diabetes but I was super fat. I hated how I looked, hated clothes on my body, I was embarrassed to go to class to I skipped and screwed up my GPA and got kicked out of a certain college… It sucked. I only wanted to be skinny and here I was in great control of this disease but fat. Anyways, I won’t go on and on about this but you are not alone… Recently I went on the South Beach Diet (low, almost no carb) and lost like 30 lbs! But problem was I got used to not really taking insulin because I wasn’t really eating anything with carbs in it and then when I did start to eat things with carbs in it… I still didn’t take insulin… So my endo wasn’t very happy with all this weight loss because my a1c is back up to 9.5
It’s a struggle every single moment of every single day and it makes me pretty suicidal thinking about how once again, I have no diabetic friends and so I’m always the odd one out. If I’m good with my diabetes, I’m fat. And if I don’t deal with my diabetes, then I’m normal and thin but feel like crap. I’ve recently starting getting yeast infections again (I got like 12 back to back, right before I was diagnosed) and I know it’s because my sugars are always around 250+. and this sucks… I know my story hasn’t really helped… but you are not alone. and your post really hit home to me, to let me know that I’m not alone even though I feel like I am, most of the time. I do know that when I exercise, I feel better. And I do know that a no/low carb diet works best for me because I lose weight AND I don’t have to take that much insulin. Yeah, it sucks seeing everyone else eat bread and pasta and dessert but I’d rather be thin AND feel good. And I feel like s*** when my sugar is out of control. So watching what I eat, will just have to be what works. Because fortunately I haven’t had any real complications yet and I am in control of that outcome. Keeping a food journal/diary also works very well… I track how much insulin I take too… Yeah, this is a lot of work but we can’t be diabulimic forever. I’d eventually like to have kids and be able to walk when I’m old… We’re all beautiful in our own ways and the people that can’t see that or make you feel like you have to change the way you are/look, need to be taken out of your life. Screw them. We’re dealing with something so complicated and complex that they will never understand. And really I think we get the better end of the stick, in the long run 
Hi there honey, I have had D so loooong I can’t remember anything else which in some ways is good, I have nothing else to compare my life to.
I have struggled with control issues for what seems like forever, I still eat my food in sections on the plate, I don’t like mixing stuff up (my friends think it’s cute/funny), i have pretty much stopped eating altogether at times.
Then the not taking my insulin, feeling cr*ppy, tired and thirsty all the time…
which leads me to when I got the flu. I believe it hit me so hard because of the abuse I was putting my body through, I was 15 and I nearly died from DKA, my mum slept by my bed thats how serious it got, then I got pneumonia. My Dr let me go for three days solid vomiting with it before I was hospitalised as he missed it, my poor parents had never experienced DKA either. It was a whole new slant on keeping your sugars up to get the ketones to eat the fat, but when it’s out of your ‘control’ for want of a better word, it gets into a whole other type of nasty.
I lost 3 1/2 stones in less than a week, I was 5’10 and weighed 6.5 stones. it was agony when the fat ran out, it burned my muscles. I cannot even begin to describe it to you, but it scared the bejeesus out of me. I am not trying to frighten you honey, I am just saying by putting so much stress on your system you leave yourself open to other stuff. and gawwd the yeast infections from high BGs don’t even get me started on them Ahhhhrgh
I am by no means ‘fixed’, I have food demons, sometimes when I lapse I almost can’t bring myself to eat because I have to, if that makes sense. I will outright ban things from the house because I can’t not eat them, and if my endo criticises me or tells me I can’t/shouldn’t/ought to eat something I get obsessed by it, again it comes back to control IMHO. but I am trying hard and refuse to go back if I can help it because I desperately want to have a baby.
Please please try to speak with your endo (Iknow they get caught up in the mechanics and forget the head stuff but they might be able to help) or a behavioural therapist, to try and help you to alter the way you look at this
Always here
Lou x
Hi,
not too much more to add, but just wanted to say that you’re not alone! we’re all trying to deal with this in various ways, or figure out at least how to make it manageable.
is there anything that you’re especially interested in, or would like to do? i know for me i have to really push myself to go out and do things, but not isolating myself at home makes a huge difference in how i feel about life in general, and makes life a bit easier to deal with when things are bad. (but easier said than done, i know!)
and anyway, now you have all of us please keep writing and let us know how you’re doing or if there’s anything i can do to help or support you in this.
take care,
alli
I was Dx 12 years ago at the age of 18. I had Bulimia and binged 3 times a day. My A1C got up to 13 and I basically almost died. Today I am teaching weight loss and my A1C is 4.9. I eat lost of low carb veggies and healthy proteins. About 4 mini meals and 2 meal replacement bars between meals. I exercise a lot to help with any peaks in my sugar. But over all I take almost no insulin cause I am not eating anything bad. Just what I need to keep even. I weight is 120 lbs and I am about 5’6’’ so I know what I’m doing will not make me gain weight. If I can help in any way let me know.
Just to clarify, you ARE taking insulin right? Just less than before. You can reduce the amount of insulin you take by eating less carbs and exercising more. Just want to make sure that everyone understands what you meant by your comment.
Glad to hear that you are living such a healthy life! I’m trying to move in that direction too!
Yes I am, on a pump but when I had no control I needed over 100 units but now I only call for about 20 units. I worried that I was low in Calories but I am getting about 1,200 to 1,500 a day. I would say 60% is from Veggies I didn’t want to get too much pro.
i’ve never intentionally had high bloodsugars, but a bad string of hypoglycemic seizures as a teenager somehow made me think having HIGH bloodsugars would solve it. i’ve had ketoacidosis several times and lost 50 pounds since then due to highs. I’ve been accused of “diabulimia” and i KNOW how horrible the highs feel… you don’t want to feel that way, but routine makes it hard to change. best of luck… you’ve got support like no other here.
Behavioral Diabetes Institute had this link which has a few of their presentations about it. Not sure if they will help.
http://behavioraldiabetes.org/resources-diabetes-information-videos-BDI-lectures.html